Health-Related Quality of Life in Patients with CVID Under Different Schedules of Immunoglobulin Administration: Prospective Multicenter Study

Pulvirenti, Federica; Cinetto, Francesco; Pecoraro, Antonio; Carrabba, Maria; Crescenzi, Ludovica; Neri, Raffaella; Bonanni, Livia; Fabio, Giovanna; Agostini, Carlo; Spadaro, Giuseppe; Tabolli, Stefano; Farrugia, Albert; Quinti, Isabella; Milito, Cinzia

doi:10.1007/s10875-019-0592-5

Cited by 15 publications

(12 citation statements)

References 39 publications

(55 reference statements)

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“…Weekly dosing is required in conventional SCIG, as only a limited volume of IgG can be infused into the subcutaneous tissue. Meanwhile, the fSCIG method allows a larger volume of IgG to be administered, and therefore, only requires dosing every 4 weeks, analogous to IVIG ( 5 ). This may reduce the burden of SCIG treatment, as well as improve patients' quality of life and their adherence to treatment.…”

Section: Introductionmentioning

confidence: 99%

Facilitated Subcutaneous Immunoglobulin Replacement Therapy in Clinical Practice: A Two Center, Long-Term Retrospective Observation in Adults With Primary Immunodeficiencies

et al. 2020

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Facilitated subcutaneous immunoglobulin (fSCIG) replacement therapy is the latest method of IgG administration; however, real-life data are limited. We retrospectively analyzed the everyday experience of fSCIG administration, particularly, the method used to switch from intravenous immunoglobulin (IVIG) or subcutaneous immunoglobulin (SCIG) to fSCIG and the dosing modifications required. Of the 39 adult patients with primary immunodeficiency (PID) who received fSCIG, 34 remained on the therapy at the end of the study. The median observation time was 18 (range, 3–24) months. Two patients were IgG-treatment-naïve; 23 had previously received IVIG and 14 had received SCIG. In 25 cases, a non-ramp-up dosing mode was used to switch to fSCIG (including two half-monthly doses given biweekly in 14 cases, and full monthly doses given in 11 cases), a ramp-up mode was used in six cases; other methods were used in eight cases. The median IgG trough level at baseline was 7.9 g/L ( n = 38), 7.9 g/L ( n = 32) at Month 6, 9.0 g/L ( n = 30) at Month 12, 8.6 g/L ( n = 22) at Month 18, and 9.0 g/L ( n = 11) at Month 24. No serious bacterial infections or hospitalizations due to PID complications occurred. At the end of the study, 24 patients (71%) received fSCIG every 4 weeks, six (18%) received fSCIG every 3 weeks, and four (12%) received fSCIG biweekly. In conclusion, our study provides real-life evidence of clinical efficacy of personalized fSCIG treatment when switching from prior immunoglobulin replacement using various switching modes and dosing frequencies.

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Section: Introductionmentioning

confidence: 99%

Facilitated Subcutaneous Immunoglobulin Replacement Therapy in Clinical Practice: A Two Center, Long-Term Retrospective Observation in Adults With Primary Immunodeficiencies

et al. 2020

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“…That said, these attributes and levels were de ned with direct patient input and in consultation with clinical experts. Finally, while the characteristics of survey respondents were largely consistent with samples from previous studies conducted in this population [20,22,23], our sampling framework does not guarantee that our preference estimates are representative of the broader PAD patient population.…”

Section: Discussionmentioning

confidence: 76%

“…Similar efforts have previously shown to have an impact in treatment acceptance and quality of life among patients with common variable immune de ciency. [20] With this in mind, preference-based tools in support of shared decision making could also help improve treatment adherence and outcomes.…”

Section: Discussionmentioning

confidence: 99%

Primary Immune Deficiency: Patients’ Preferences for Replacement Immunoglobulin Therapy

González

Ballow

Fairchild³

et al. 2021

Preprint

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Purpose: Immunoglobulin (Ig) replacement therapy is an important life-saving treatment modality for patients with primary antibody immune deficiency disorders (PAD). IVIG and SCIg are suitable alternatives to treat patients with PAD but vary in key ways. Existing evidence on patient preferences for Ig treatments given the complexities associated with IVIG and SCIg treatment is limited and fails to account for variations in preferences across patients. For this reason, we sought to evaluate PAD patient preferences for features of IVIG and SCIg across different patient characteristics.Methods: 119 PAD patients completed a discrete-choice experiment (DCE) survey. The DCE asked respondents to make choices between carefully constructed treatment alternatives described in terms of generic treatment features. Choices from the DCE were analyzed to determine the relative influence of attribute changes on treatment preferences. We used subgroup analysis to evaluate systematic variations in preferences by patients’ age, gender, time since diagnosis, and treatment experience. Results: Patients were primarily concerned about the duration of treatment side effects, but preferences were heterogeneous. This was particularly true around administration features. Time since diagnosis was associated with an increase in patients’ concerns with the number of needles required per infusion. Also, patients appear to prefer the kind of therapy they are currently using which could be the result of properly aligned patient preferences or evidence of patient adaptive behavior. Conclusions: Heterogeneity in preferences for Ig replacement treatments suggests that a formal shared decision making process could have an important role in improving patient care.

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“…In accordance with the rules of drug reimbursement before the pandemic, the patients were obliged to visit their treatment center at least every 12 weeks. 10 IVIG treatment was possible only in hospital conditions. During the pandemic, many hospitals, including those with PID treatment centers, were also dedicated to the care of patients with COVID-19.…”

Section: Discussionmentioning

confidence: 99%

A multicenter survey on the aspects of everyday life in adult patients with primary antibody deficiencies treated with immunoglobulin G replacement during the COVID-19 pandemic

Napiórkowska-Baran

Rosada

Więsik-Szewczyk

et al. 2021

Int J Immunopathol Pharmacol

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Introduction The COVID-19 pandemic has changed many aspects of everyday life. Patients with primary immunodeficiency (PID) are in a particularly difficult situation. The purpose of the present study was to contribute to the very limited research on the everyday aspects of functioning in PID patients during the COVID-19 pandemic. Methods The survey included 85 adult PID patients treated with immunoglobulin replacement therapy in four reference centers for immunology. Everyday functioning of the patients as well as their opinion concerning new solutions in medical care were analyzed. Results During the pandemic, the percentage of patients experiencing fear/anxiety has increased from 47% to 70%. The wide dissemination of information about the SARS-CoV-2 in the media has increased anxiety in 40% of the patients. Patients diagnosed with PID were most afraid of the exposure to contact with strangers, especially in public places. As many as 67 respondents (79%) considered the introduction of restrictions concerning social functioning as good. Only every fifth person learned about the pandemic from reliable sources. Eighty three percent of the patients receiving immunoglobulin substitution experienced less fear of SARS-CoV-2 infection. The patients positively evaluated the solutions related to the direct delivery of drugs to the place of residence in order to continue home IgRT therapy. Fifty three respondents (62.5%) believed that the possibility of a remote consultation was a very good solution. Conclusion It is necessary to increase educational activities concerning the pandemic provided by health care professionals, as patients obtain information mainly from the media and the Internet, which adversely affects the feeling of anxiety. The pandemic, in addition to the very negative impact on patients and the deterioration of their daily functioning, has made patients appreciate their life more, devote more time to family and friends, and do things they like.

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Health-Related Quality of Life in Patients with CVID Under Different Schedules of Immunoglobulin Administration: Prospective Multicenter Study

Cited by 15 publications

References 39 publications

Facilitated Subcutaneous Immunoglobulin Replacement Therapy in Clinical Practice: A Two Center, Long-Term Retrospective Observation in Adults With Primary Immunodeficiencies

Facilitated Subcutaneous Immunoglobulin Replacement Therapy in Clinical Practice: A Two Center, Long-Term Retrospective Observation in Adults With Primary Immunodeficiencies

Primary Immune Deficiency: Patients’ Preferences for Replacement Immunoglobulin Therapy

A multicenter survey on the aspects of everyday life in adult patients with primary antibody deficiencies treated with immunoglobulin G replacement during the COVID-19 pandemic

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